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Supportive Care in Cancer

, Volume 24, Issue 6, pp 2437–2444 | Cite as

Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives

  • Sarah HohlEmail author
  • Yamile Molina
  • Lisel Koepl
  • Kerri Lopez
  • Eric Vinson
  • Hannah Linden
  • Scott Ramsey
Original Article

Abstract

Purpose

To better understand satisfaction with care among American Indian and Alaska Native (AI/AN) persons with cancer, we explored dimensions of the provider relationship that contributed to satisfaction among caregivers and survivors who received cancer treatment in Oregon and Washington State.

Methods

Between November 2011 and April 2013, the project team interviewed 11 caregivers and 71 AI/AN cancer survivors residing in Oregon and Washington State. Interview questions aimed to elicit participant experiences with care providers and factors associated with cancer care satisfaction. Interviews were analyzed using an inductive content analysis approach in which concepts were identified and themes derived from interview data.

Results

Three overarching themes, each with two sub-themes, emerged from the data: (1) universal factors: bolstering understanding, involvement, and empathy in care; (2) minority-specific factors: incorporating culture and community into care; and (3) AI/AN-unique factors: interacting with Indian health clinics and Indian Health Service (IHS).

Conclusions

The results of our study suggest that satisfaction with care among survivors and their caregivers must be examined within the context of culture and community, particularly among minority patients. Our study demonstrates providers’ critical role in ensuring AI/AN patients emerge satisfied with cancer treatment by honoring their AI/AN-specific needs, such as respect for integration of traditional healing modalities and navigation of specialty care coordination.

Keywords

Race/ethnicity Satisfaction with care Cancer health disparities Patient-provider relationship Cultural competence Survivorship 

Abbreviation

AI/AN

American Indian/Alaska Native

AIMS

Cancer among American Indians: A Multi-State Study

FHCRC

Fred Hutchinson Cancer Research Center

HICOR

Hutchinson Center for Cancer Outcomes Research

IHS

Indian Health Service

NHW

non-Hispanic whites

NPAIHB

Northwest Portland Area Indian Health Board

Notes

Acknowledgments

The authors would like to thank the staff and investigators at all collaborating institutions: the FHCRC Hutchinson Institute for Cancer Outcomes Research (HICOR); the Northwest Portland Area Indian Health Board; and the AIMS Advisory Board, Oregon State Cancer Registry. We would also like to extend our gratitude to the study participants and community members, who provided insight and perspective, and without whom this work would not be possible.

Compliance with ethical standards

Disclosure

The content is solely the responsibility of the authors and does not necessarily represent the official views of NIH, NCI, FHCRC, HICOR, NPAIHB, University of Illinois-Chicago, Seattle Cancer Care Alliance, or the University of Washington. The authors have full access to all primary data. Given the ethical standards and protocols with this vulnerable population, primary data may be shared upon approval by the Portland Area Indian Health Service Institutional Review Board and the Northwest Portland Area Indian Health Board.

Funding

This work was supported by grants from the National Institutes of Health (NIH), National Cancer Institute (NCI) (R01 CA125231 to S. Ramsey).

Conflict of interest

The authors declare that they have no competing interests.

References

  1. 1.
    National Center for Health Statistics (2012) Health, United States, 2011: with special feature on socioeconomic status and healthGoogle Scholar
  2. 2.
    Reuben SH (2003) Facing cancer in Indian country: the Yakama Nation and Pacific Northwest Tribes: President’s Cancer Panel 2002 Annual Report., US Department of Health and Human Services, National Institutes of Health, National Cancer Institute Google Scholar
  3. 3.
    Puukka E, Stehr-Green P, Becker TM (2005) Measuring the health status gap for American Indians/Alaska Natives: getting closer to the truth. American journal of public health 95:838CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Kaur JS, Hampton JW (2008) Cancer in American Indian and Alaska Native populations continues to threaten an aging population. Cancer 113:1117–1119CrossRefPubMedGoogle Scholar
  5. 5.
    Wiggins CL, Espey DK, Wingo PA, Kaur JS, Wilson RT, Swan J et al (2008) Cancer among American Indians and Alaska Natives in the United States, 1999–2004. Cancer 113:1142–1152CrossRefPubMedGoogle Scholar
  6. 6.
    White MC, Espey DK, Swan J, Wiggins CL, Eheman C, Kaur JS (2014) Disparities in cancer mortality and incidence among American Indians and Alaska Natives in the United States. American journal of public health 104:S377–S387CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    J. J. Guidry, A. Greisinger, L. A. Aday, R. J. Winn, S. Vernon, and T. A. Throckmorton, "Barriers to cancer treatment: a review of published research," in Oncology nursing forum, 1996, pp. 1393–1398.Google Scholar
  8. 8.
    S. H. Javid, T. K. Varghese, A. M. Morris, M. P. Porter, H. He, D. Buchwald, et al., "Guideline-concordant cancer care and survival among American Indian/Alaskan Native patients," Cancer, 2014Google Scholar
  9. 9.
    Garroutte EM, Kunovich RM, Jacobsen C, Goldberg J (2004) Patient satisfaction and ethnic identity among American Indian older adults. Social Science & Medicine 59:2233–2244CrossRefGoogle Scholar
  10. 10.
    Guadagnolo BA, Cina K, Helbig P, Molloy K, Reiner M, Cook EF et al (2009) Medical mistrust and less satisfaction with health care among Native Americans presenting for cancer treatment. J Health Care Poor Underserved 20:210CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Barbosa CD, Balp M-M, Kulich K, Germain N, Rofail D (2012) A literature review to explore the link between treatment satisfaction and adherence, compliance, and persistence. Patient Prefer Adherence 6:39–48CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    Brédart A, Bouleuc C, Dolbeault S (2005) Doctor-patient communication and satisfaction with care in oncology. Current opinion in oncology 17:351–354CrossRefPubMedGoogle Scholar
  13. 13.
    Stewart MA (1995) Effective physician-patient communication and health outcomes: a review. CMAJ: Canadian Medical Association Journal 152:1423PubMedPubMedCentralGoogle Scholar
  14. 14.
    R. Royak-Schaler, S. R. Passmore, S. Gadalla, M. K. Hoy, M. Zhan, K. Tkaczuk, et al., "Exploring patient-physician communication in breast cancer care for African American women following primary treatment," in Oncology nursing forum, 2008, pp. 836–843.Google Scholar
  15. 15.
    Thorne SE, Bultz BD, Baile WF (2005) Is there a cost to poor communication in cancer care?: a critical review of the literature. Psycho‐Oncology 14:875–884CrossRefPubMedGoogle Scholar
  16. 16.
    Mead EL, Doorenbos AZ, Javid SH, Haozous EA, Alvord LA, Flum DR et al (2013) Shared decision-making for cancer care among racial and ethnic minorities: a systematic review. American journal of public health 103:e15–e29CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Vogel O, Cowens-Alvarado R, Eschiti V, Samos M, Wiener D, Ohlander K et al (2013) Circle of life cancer education: giving voice to American Indian and Alaska Native communities. Journal of Cancer Education 28:565–572CrossRefPubMedGoogle Scholar
  18. 18.
    Warne D, Frizzell LB (2014) American Indian health policy: historical trends and contemporary issues. American journal of public health 104:S263–S267CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Mack N, Woodsong C, MacQueen KM, Guest G, Namey E (2005) Qualitative research methods: a data collectors field guideGoogle Scholar
  20. 20.
    J. Corbin and A. Strauss, Basics of qualitative research: Techniques and procedures for developing grounded theory: Sage Publications, Incorporated, 2007Google Scholar
  21. 21.
    LaFrance J (2004) Culturally competent evaluation in Indian country. New Directions for Evaluation 2004:39–50CrossRefGoogle Scholar
  22. 22.
    Chino M, DeBruyn L (2006) Building true capacity: indigenous models for indigenous communities. American journal of public health 96:596CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Noe TD, Manson SM, Croy C, McGough H, Henderson JA, Buchwald DS (2006) The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities. Ethnicity & Disease 17:S6–14Google Scholar
  24. 24.
    Burhansstipanov L, Schumacher SCSA (2005) Lessons learned from community-based participatory research in Indian country. Cancer control: journal of the Moffitt Cancer Center 12:70Google Scholar
  25. 25.
    Hsieh H-F, Shannon SE (2005) Three approaches to qualitative content analysis. Qualitative health research 15:1277–1288CrossRefPubMedGoogle Scholar
  26. 26.
    Booth A, Carroll C, Ilott I, Low LL, Cooper K (2013) Desperately seeking dissonance: identifying the disconfirming case in qualitative evidence synthesis. Qual Health Res 23:126–41CrossRefPubMedGoogle Scholar
  27. 27.
    Ha JF, Longnecker N (2010) Doctor-patient communication: a review. The Ochsner Journal 10:38–43PubMedPubMedCentralGoogle Scholar
  28. 28.
    Schim SM, Doorenbos AZ (2010) A three-dimensional model of cultural congruence: framework for intervention. Journal of social work in end-of-life & palliative care 6:256–270CrossRefGoogle Scholar
  29. 29.
    Guadagnoli E, Ward P (1998) Patient participation in decision-making. Social science & medicine 47:329–339CrossRefGoogle Scholar
  30. 30.
    Guadagnolo BA, Boylan A, Sargent M, Koop D, Brunette D, Kanekar S et al (2011) Patient navigation for American Indians undergoing cancer treatment. Cancer 117:2754–2761CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    L. U. Krebs, L. Burhansstipanov, S. Watanabe-Galloway, N. L. Pingatore, D. G. Petereit, and D. Isham, "Navigation as an intervention to eliminate disparities in American Indian communities," in Seminars in oncology nursing, 2013, pp. 118–127.Google Scholar
  32. 32.
    Burhansstipanov L, Gilbert A, LaMarca K, Krebs LU (2001) An innovative path to improving cancer care in Indian country. Public Health Reports 116:424CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Burhansstipanov L, Krebs LU, Watanabe-Galloway S, Petereit DG, Pingatore NL, Eschiti V (2012) Preliminary lessons learned from the “Native Navigators and the Cancer Continuum” (NNACC). Journal of cancer education 27:57–65CrossRefGoogle Scholar
  34. 34.
    Goldberg S, Wallace J, Jackson J, Chaulk C, Nolan C (2004) Cultural case management of latent tuberculosis infection. The International Journal of Tuberculosis and Lung Disease 8:76–82PubMedGoogle Scholar
  35. 35.
    Warren-Mears V, Dankovchik J, Patil M, Fu R (2013) Impact of patient navigation on cancer diagnostic resolution among Northwest Tribal communities. Journal of Cancer Education 28:109–118CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Indian Health Service. (October 28, 2015). Contract health services. Available: https://www.ihs.gov/forpatients/index.cfm/chs/
  37. 37.
    Scheppers E, Van Dongen E, Dekker J, Geertzen J, Dekker J (2006) Potential barriers to the use of health services among ethnic minorities: a review. Family Practice 23:325–348CrossRefPubMedGoogle Scholar
  38. 38.
    Warne D, Kaur J, Perdue D (2012) American Indian/Alaska Native cancer policy: systemic approaches to reducing cancer disparities. Journal of cancer education 27:18–23CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Sarah Hohl
    • 1
    • 2
    Email author
  • Yamile Molina
    • 3
  • Lisel Koepl
    • 1
  • Kerri Lopez
    • 4
  • Eric Vinson
    • 4
  • Hannah Linden
    • 1
    • 5
    • 6
  • Scott Ramsey
    • 1
    • 6
  1. 1.Fred Hutchinson Cancer Research Center, Public Health Sciences DivisionSeattleUSA
  2. 2.School of Public Health, Department of Health ServicesUniversity of WashingtonSeattleUSA
  3. 3.School of Public Health, Center for Research on Women and Gender, Cancer CenterUniversity of Illinois-ChicagoChicagoUSA
  4. 4.Northwest Portland Area Indian Health BoardPortlandUSA
  5. 5.Seattle Cancer Care AllianceSeattleUSA
  6. 6.School of MedicineUniversity of WashingtonSeattleUSA

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